Lymphoma changed Emmet and Toni Stephenson; now they want to change it

During their 46-year marriage – an attraction begun as kindergarten sweethearts – entrepreneurs Emmet and Toni Stephenson have worked together to build diverse businesses ranging from portfolio management to Internet publishing. When Toni was diagnosed with T cell lymphoma last spring, the couple refocused their energies into restoring her health.

Emmet and Toni Stephenson with their daughter Tessa Stephenson Brand

“Cancer became the center of our life,” Emmet said. “Our priorities really got changed and turned upside down almost instantly.”

“It did change us,” Toni said. “It was quite a summer.”

Toni is currently in remission following treatment at City of Hope, and the couple and their only child, Tessa Stephenson Brand, recently gave City of Hope $10 million to create the Toni Stephenson Lymphoma Center. That center is the cornerstone of City of Hope's new Hematologic Malignancies Institute.

Here, the couple shares their life-changing experience – and how it led them to where they are today: trying to change the future for other people with lymphoma.

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The disease’s onset was abrupt.

“We work together and travel a lot,” Toni said. Returning home from a trip about a year ago, she found a lump on her neck, which a local doctor initially suspected to be a sprained muscle. When it was still there two weeks later, “I said, ‘something’s wrong here,’” remembered Toni.

Her instinct was right. In April she was diagnosed with T cell lymphoma. After consulting with the nation’s leading oncologists about this rare but virulent form of non-Hodgkin lymphoma, the Stephensons decided to go with the conventional chemotherapy regimen: CHOP (cyclophosphamide, adriamycin, vincristine and prednisone), commonly used for aggressive lymphoma.

However, in July, the cancer infiltrated the spinal fluid surrounding Toni's brain. Once the central nervous system was involved, “that made it a whole different situation,” she said. “We immediately came to City of Hope.”

“She was in a lot of pain,” recalled Emmet. “We were in a hurry to get the treatment started.” After the diagnosis was confirmed by City of Hope’s lymphoma team, Toni was immediately admitted under the care of Auayporn Nademanee, M.D., the Jan & Mace Siegel Professor in Hematology & Hematopoietic Cell Transplantation.

“We had investigated different hospitals, and concluded this was the best cancer treatment hospital in the country,” Emmet said. The couple based their selection on the recommendation of a close friend (a retired oncologist), the fact that City of Hope focuses on cancer, and the institution's enormous staff of world-class oncologists. “It’s extraordinary how fast they move in terms of diagnosis and treatment,” said Emmet, who also was impressed that senior doctors visit hospitalized patients on the weekends.

The four CHOP treatments put Toni’s systemic cancer into remission and when the central nervous system cancer appeared, she began taking a chemotherapy combination called ICE (ifosfamide, carboplatin and etoposide).

In September, she underwent an autologous stem cell transplant in which her blood stem cells were collected and stored. After she received high-dose chemotherapy, her stem cells were reinfused back into her, allowing swifter recovery from the intensive therapy.

“We’re fortunate she’s responded well to all the treatments,” said Emmet. Toni still takes intrathecal chemotherapy (administered monthly into the spinal fluid to prevent central nervous system relapse) but is considered to be in remission.

'I'm taking care of Toni'

Toni remembers the turbulent months leading up to the current calm. When Emmet heard the diagnosis, “he just shut down his involvement in our businesses,” Toni said, telling senior employees, ‘You guys know what to do. I’m taking care of Toni.’ And he did. He started researching and learning all he could about lymphoma. I was reading as much as I could but I was in pain and tired a lot of the time.”

In the midst of the diagnosis and treatment, Tessa was planning her wedding, scheduled for Sept. 7, 2013. She had suggested postponing the date, but her mother would not hear of it. “It would have upset her more to do that,” Tessa said.

“It was a wonderful distraction,” recalled Toni. “It set a goal for me. I wanted to be as healthy as I possibly could the week before Sept. 7, so Labor Day was my aim.”

“The doctors were very sympathetic to our problem,” said Emmet. They inserted Toni’s Hickman catheter low enough in her chest that it was not visible above the neckline of her dress, and scheduled CHOP/ICE cycles so they wouldn’t interfere with the wedding and accompanying festivities. She’d had a good week when the wedding occurred, Emmet said, so much so that “she danced for four hours at the wedding.”

The Stephensons founded StarTek Inc., and operate Stephenson Ventures, a portfolio management and private equity company, and Emmet was director of Danaher Corporation for 22 years. They are perhaps best known for creating Domain.com, an Internet-publishing empire that includes Doctors.com, Hospitals.com, Wedding.com and Birthday.com.

Emmet likened conquering cancer to tackling an immensely complex business problem: In this case, the objective is boosting survival rates and prevention techniques and eradicating the disease. “You analyze your alternatives, put resources behind them to get them investigated and read the results. When you’re headed down the wrong path, change directions until you find the end point you want. Then get it to everybody in the world.”

Last December, Emmet attended the American Society of Hematology (ASH) meeting in New Orleans to identify potential drugs in the pipeline should Toni need them. “I may have been the only person there representing a patient,” he said. “I came back with a list of four or five more drugs beyond the third fallback we already knew about.”

He was joined at ASH by more than 20,000 physicians from all over the world. Among the more than 4,000 clinical trials reported, he attended scores of sessions about lymphoma. “I was amazed at the amount of research going on, including many on T cells,” he said.

“They’re circling the problem and closing in on reasons cancer exists and what may be causing it,” he said. “Part of the answer is that we live longer. The fact that life expectancy in the last 200 years has gone from 30 to the 70s means that we get old enough to be exposed to higher risk of it.

“Cancer is the fastest-growing disease, and it’s insidious. There are so many different kinds. It’s still a book with a lot of blank pages in it, and a lot of work’s got to be done,” he said.

'This is a problem that needs solving'

During a recent interview at City of Hope, Emmet looked over fondly at Toni. “We have a big picture in our house of 18 children in our kindergarten class. Toni looks today like she looked then,” he said.

“We’ve asked doctors, ‘What caused her cancer? She doesn’t smoke or drink. She eats healthy and exercises. Why does she have cancer?' It doesn’t make any sense. None of those things may have anything to do with the kind of cancer she has.”

“The most surprising thing I learned through all this,” said Emmet, “is that half of all men will get cancer at some point in their lives, and a third of all women. If you add those two together that’s 42 percent of the population, which is 134 million people over the next 60 to 80 years. It’s an immense problem. And it’s one of the reasons we want to make this donation. This is a problem that needs solving.”

“There are a lot of lymphoma patients out there,” said Toni. “The world has done a great job of treating the symptoms. So now, let’s get down to prevention and causes and eradicate it.”

The Stephensons are devoted philanthropists. “An entrepreneurial approach toward a big problem like this can get you results that won’t necessarily be accomplished by just doing things the way everyone else does them,” Emmet said.

Emmet Stephenson should know. He built his reputation – and his businesses – as an out-of-the-box thinker. For instance, on a flight to Singapore two decades ago, he read about the World Wide Web. “It occurred to me that these domain names were like rare corner properties in limited supply in a major city.”

As soon as he returned, “I found a lady who knew how to register names, and I pulled out the yellow pages and started registering the categories at the top of the page. We’d registered 200 of them by midnight that night (including prominent ones such as Doctors.com and Hospitals.com, which he calls "'category killers’ – the best name you can have for a certain business”). Today, the couple have nearly 10,000 domain names.

“I’ve always felt that you have to be different to be outstanding,” said Emmet. “If you do something like everybody else, you’re going to just be average.”

“We saw that already in motion at City of Hope. The people here are not average by a long shot. They collected these large numbers of oncologists; the focus is on that problem (cancer). That’s the way you succeed. The track record of City of Hope proves that. It was really the leader in developing Rituxan, the most important cancer treatment drug invented in this country in 50 years, and really the only major advance in cancer treatment since the 1970s. They have the right mindset. They have hundreds of clinical trials. It’s a hotbed of innovation and new thought. That’s exactly what’s needed to solve big problems.”

Innovation, new thought and, of course, a business plan

Whether the Stephensons are donating money or investing it in a business, they want to see a business plan. “What’s the product, what’s the service; how will we get revenue? Is it going to come from donations, grants, royalties, selling services or a combination of those? You want to do it in such a way that the people running it think that way. City of Hope already does. This is one of the most successful charities in the world. There’s nothing we can teach City of Hope.”

“We’d like for our gift to simply add to the prestige and capability that City of Hope already has, focus attention on something it already does well and enable it to bring in more experts.”

“The goal is to accelerate the rate of gain in knowledge and rapidity of research in order to get on top of this and beat it sooner rather than later,” said Emmet.

“We’re not medical people so we have to leave that to the experts,” said Toni. “But we can help support them” and perhaps inspire others to donate.

“That’s the whole goal here,” said Emmet. “Somebody did it for us years ago, tackling diseases that are now nonexistent in the U.S. Maybe we can do that for the next generation.”

The Stephensons’ next generation –Tessa – who recently moved from a career in the film business to opening Tessa Lyn Events, a wedding and event planning company, recalls that her parents always gave generously to charities. “What’s different about my parents is that they don’t just write a check. They learn about the organization, where that money goes and how they can help to fund raise.

“They gave me a small amount of money each year and I got to choose three charities,” Tessa recalled of her childhood philanthropy. “I would usually do the ones they would do. We started giving money to Alzheimer’s after my grandfather passed away."

She added: "I started to see that once certain things happen in your life, you tend to want to give to that, so obviously, cancer will become the first priority I think in all charitable contributions in the future.”

Thank you Emmet and Toni ! We had a similar experience – my husband’s aggressive NHL diagnosis came in May , treatment began in June , and our son’s wedding was Aug. 10th 2013 , and auto transplant was Nov. 19. We know how hard this year has been for you. Unfortunately, my husband’s lymphoma has already come back, and we will continue treatment at COH . Your attitude of hands-on helping to tackle the disease by helping the experts is inspiring. Thanks for sharing your story.

Toni Stephenson

Ellen, Thank you for contacting me. We do have a lot in common. I am praying for your husband’s second recovery. Someday, my wish is that no one will get this horrible disease. Take care of yourself and your family.